Antiretrovirals to treat MECFS

[Who Me?]

There is a very long and interesting convo about this on PR. I'll add a few quotes. If anyone knows cornwellsb, please ask him to post here

Here is the thread

http://forums.phoenixrising.me/inde...ds-treatment-for-cfs.45823/page-7#post-774570

If you want to try HIV drugs on cfs/me it is very very easy in the US. The drug is called truvada ... It is basically viread and another AV. emtricitabine 200 mg and tenofovir disoproxil fumarate 300 mg. It is prescribed as PreP or pre exposure prevention for HIV which a large amount of people have been taking for 5 or 6 years for this purpose. It is supposed to be 95% effective at preventing HIV ... That being said, I have cfs and was recently diagnosed after 5 or 6 years of constant fatigue. I started taking prep as purely preventative measure against HIV about a year ago. I did notice a major change for the better in my fatigue but it did not go away completely. After looking for answers to my fatigue I was finally diagnosed with cfs and put on valcyte and valtrex (along with truvada). I noticed a drastic change almost over night from there and I'm doing quite well. I only put 2 + 2 together today and equate my original slowly getting better this year to truvada but this was not over night. I did notice a change after about 3 months. ... The addition of the other AVs must be fighting off something else. After adding valtrex, my headaches, blurry vision and dizziness ended (sometimes I still get a little dizzy) ... Fatigue is still there slightly but at 20% what it was.

Starting truvada moved me from a scale of 5 to about 7. Valtrex and valcyte have pushed me to 8 and some days 9. I am at the gym 6 days a week now which would have been absurd over a year ago.

Getting onto truvada is fairly easy and covered by most insurance (it's 2500 a month) half the gay population in NYC is on it now to prevent HIV infection and there are signs in every subway promoting it in NYC. The company gilead actually pays your copay.

If you want to try antivirals it is fairly easy to get in but requires the same testing as other antivirals every few months.
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cornwellsb, Yesterday at 8:18 PM
#128

2. The only thing with that is if an underlying retrovirus similar to HIV was suspected, it may result in the development of resistance and inability to control the infection since only nucleoside analog reverse transcriptase inhibitors are being used. It's not as easy to get the other classes of HIV drugs such as integrase inhibitors.
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   undiagnosed, Yesterday at 9:54 PM
   #130
   
3. 
   cornwellsb
   
   Messages:
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   Possibly yes but At this point we have a choice of living our lives with cfs and hoping on a future cure 20 years from now (or finding some random herb or other medication that might help) or turning yourself into a Guinea pig. I'm choosing the self medication route as it seams there are very few options. I could also get cancer from all these AVs as well but I intend to try and cut back on some eventually. I've been taking this for over a year before cfs was even diagnosed so there is no turning back now. For now it seems to be working for me but some of this is still theory. Everyone is different. I have no evidence except for the fact that I personally feel better, Time will tell I suppose. I do have a cfs specialist (dr Susan Levine) I see regularly in NYC but everyone is guessing at this point.
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   cornwellsb, Yesterday at 10:20 PM
   #131
   

 

[garnet10]

Has anyone tried anti-retrovirals on this forum? I know Hustler on this forum is in remission, and there was another person on PR who no longer posts there. Has anyone else tried ARV's?

 

[PatrickJoseph]

in the UK GP's - for ME/CFIDS (no test it exists/neg test results) - refuse antiviral prescriptions -- private or on NHS.
they basically offer mental health help.
Dont know if cornwellsb above had an existing viral/herpes/other issue

 

[Franz72]

Has anyone tried anti-retrovirals on this forum? I know Hustler on this forum is in remission, and there was another person on PR who no longer posts there. Has anyone else tried ARV's?

My wife. She is slowly recovering.
She is on Truvada (TDF+FTC) , some months alternating with TDF only.
Plans to add RAL in the near future

 

[Tareq]

My wife. She is slowly recovering.
She is on Truvada (TDF+FTC) , some months alternating with TDF only.
Plans to add RAL in the near future

That's amazing! If it's ok to ask, was she mildly, moderately or severely affected? I have the truvada/prEp pills now, but scared to take them in case it makes me worse.

 

[Not dead yet!]

Has anyone tried anti-retrovirals on this forum? I know Hustler on this forum is in remission, and there was another person on PR who no longer posts there. Has anyone else tried ARV's?

I brought up the idea to my doctor, of sending me to an HIV clinic nearby to see if they would help me. He said he can't refer me because I don't have HIV. Since there is an estimated 6-8% of the human genome that's retroviral, I can't really understand the limiting of these drugs to only HIV.

That's not to say I couldn't go by myself and wait for an appointment for months, without a referral. But the most probable outcome is that they also say, "sorry, no HIV, no antiretrovirals." Which puts me back into the mode of needing the money to see a functional MD who may actually prescribe it and paying entirely out of pocket for it.

So basically, that avenue is closed to me. I'm in the US.

 

[Remy]

I brought up the idea to my doctor, of sending me to an HIV clinic nearby to see if they would help me. He said he can't refer me because I don't have HIV. Since there is an estimated 6-8% of the human genome that's retroviral, I can't really understand the limiting of these drugs to only HIV.

That's not to say I couldn't go by myself and wait for an appointment for months, without a referral. But the most probable outcome is that they also say, "sorry, no HIV, no antiretrovirals." Which puts me back into the mode of needing the money to see a functional MD who may actually prescribe it and paying entirely out of pocket for it.

So basically, that avenue is closed to me. I'm in the US.

Or potentially ordering it online. But look at Klinghardt's anti-retroviral protocol. It mostly uses herbs that many people feel are even more effective than the drugs...I had access to ARVs and I stopped them for the herbs myself.

 

[shannah]

Or potentially ordering it online. But look at Klinghardt's anti-retroviral protocol. It mostly uses herbs that many people feel are even more effective than the drugs...I had access to ARVs and I stopped them for the herbs myself.

Is there a link to his protocol @Remy ?

 

[Not dead yet!]

Or potentially ordering it online. But look at Klinghardt's anti-retroviral protocol. It mostly uses herbs that many people feel are even more effective than the drugs...I had access to ARVs and I stopped them for the herbs myself.

Oh I see. Baicalin, or Scuttleria baicalensis. With Zinc apparently. Thanks for the tip.

 

[Not dead yet!]

Is there a link to his protocol @Remy ?

https://klinghardtinstitute.com/wp-content/uploads/2019/05/Dr-Klinghardt-Retroviral-Protocol-2019-Mike-locked.pdf

But I looked in Pubmed and found the name of the plant. Actually very cheap, Swanson had Chinese Skullcap for like $4 for 3 months if you take one a day. Some of the articles said it needed to be "coupled with zinc" but I"m not sure exactly how. Maybe a chemical bond. Anyway I take zinc already.

I do wonder what an effective dose is.

 

[Remy]

Is there a link to his protocol @Remy ?

I think this is the most current, https://klinghardtinstitute.com/wp-...ardt-Retroviral-Protocol-2019-Mike-locked.pdf

 

[Remy]

https://klinghardtinstitute.com/wp-content/uploads/2019/05/Dr-Klinghardt-Retroviral-Protocol-2019-Mike-locked.pdf

But I looked in Pubmed and found the name of the plant. Actually very cheap, Swanson had Chinese Skullcap for like $4 for 3 months if you take one a day. Some of the articles said it needed to be "coupled with zinc" but I"m not sure exactly how. Maybe a chemical bond. Anyway I take zinc already.

I do wonder what an effective dose is.

I took this one, https://biopureus.com/product/biopure-baikalin-powder/, at 1 teaspoon twice a day. I honestly don’t remember where I got that dose but it was probably from one of his many webinars.

 

[Issie]

Lomatium is also an antiviral. I'm using that one. And also have off and on used Chinese Skullcap. It helped, but didn't get me completely well. I still use it. I like Supreme Nutrition brand.

Trying 18 months of Lomatium to get rid of Post Lyme. Heard of a doctors husband who used it and it worked for him.

 

[Remy]

Lomatium is also an antiviral. I'm using that one. And also have off and on used Chinese Skullcap. It helped, but didn't get me completely well. I still use it. I like Supreme Nutrition brand.

Trying 18 months of Lomatium to get rid of Post Lyme. Heard of a doctors husband who used it and it worked for him.

Did you have any rash?

 

[Issie]

No, I didn't get it. I made sure I had my liver and kidneys working well with good detoxing before taking it. And I continue to work on them and use Red Root for lymph cleanse. Trying to make sure my detox pathways working well and no rash. And, it seems lots of things in regard to detox has improved. I do drink lemon water daily too.